coping with depression from having lupus - LUPUS UK


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coping with depression from having lupus

sammy289 profile image

Hi all,

I thought I would join this forum as I am struggling at the moment. I have had lupus nearly 20 years being diagnosed after 10 years. I have coped with living with lupus, my lupus effects my blood and joints which I have learnt to cope with ie resting healthy eating quit smoking. but I have always struggled with depression and it is getting worse, having suicidal thoughts that is getting stronger. I have been assessed by the mental health team. who have said I need CBT and distraction therapy.

I just wondered if anyone here has had this any tips idea's would be great.

I am looking forward to hearing from you.

Sam 😊

19 Replies

Hi Sammy

I’m sorry to hear about your depression. I’ve suffered with depression on and off for 20 years. I am currently on fluoxetine. This is the only antidepressant that has worked for me. I haven’t tried CBT or distraction therapy but it is a good idea to get in the habit of doing something (a hobby) to keep your mind busy. I like art and jigsaw puzzles. They keep my mind off the pain and don’t tire me out physically. Light exercise is also very good if you are up to it.

I have been in some very dark places mentally, particularly since my UCTD diagnosis. Talking can really help if you can find someone (family/ close friend) with a sympathetic ear. I hope you are not on your own but if you are and you are feeling very down then The Samaritans provide an excellent phone service.

I hope that you get all the help and support you need. It’s hard to remain positive sometimes but we can find much joy in life if we take steps to find it.

Big hugs x

hello thank you for your reply, I am not on my own I have my wonderful mum thank goodness. she is my rock plus I have a lot of good friends. so I should think I am very lucky. how are you feeling today? I am also going through the menopause which is not helping my mood. I am going to be referred for CBT and the doctor has increased my anti depression meds.

take care ps what is your name? Big hug too

Hello Sam,

Sorry to hear you are struggling at the moment. Twenty years is a long time to have coped with this, especially after so long in a diagnostic wilderness. I bet there are lots of things you have learned along the way. So that may be a good place to strat - remembering and appreciating how much you have already survived.

CBT is pretty useful - it's at least as good as any antidepressant and its got the advantage that you are in control of what's happening. I imagine you'll be taught a variety of techniques like mindfulness, calm breathing, substituting positive self-talk for catastrophising and so on. Some techniques might work well for you, others might seem a bit irrelevant. I guess the thing is to give them all a go, like you would if they were trial meds, and then use them whenever you need to. I've certainly found some distraction techniques handy on bad days, and most nights calm breathing and visualisations help me get off to sleep.

Do keep in touch and let us know how its going - and especially when you need a friendly ear. x

sammy289 profile image
sammy289 in reply to whisperit

Hi thank you for you message. I am stiĺl quite low I don't want to do anything apart from stay in my bed. I have been doing headspace which has help I may but mindfulness. I have a lot of support I wish I could go back to the old Sam. take care. what is your name? Big hugs

whisperit profile image
whisperit in reply to sammy289

Yes, it's really tough when you are at your lowest and just want to curl up in bed and make the world go away. Interacting, face-to-face with another human being can be the best thing though. Hopefully, your therapist will be warm and understanding enough to help you out of that situation.

I hope you understand if I don't post my real name on the open forum; a bit of anonymity makes it easier to be open and honest about my experiences. x

Hi sam sorry your feeling low and hope you can find something you like to focus on. Meditation is quite uplifting I did a lot of that several years ago nit so much now I don’t seem to be able to focus the same so tend to do or potter around my garden I get tired way to quick and the old joints stop me doing a lot sadly but I do have my off days which I hate it’s not a nice feeling for sure thinking of you am sure many can relate but talking in here and having support am sure will help take care hugs sandra x

sammy289 profile image
sammy289 in reply to Loopyloo43

Hi Sandra sorry to hear you have bad days too. it is horrible. I hope you are having a good day. thank you for you message

big hugs

I can’t add much more to the useful advice above. The mental health team need to know about any suicidal thoughts, if they don’t already. Whisperit’s advice about the Samaritans is useful. I call them sometimes when I’m in a lot of pain, or frustrated. A gentle non judgemental listening ear can help a lot. I’d call them I’d having thoughts of suicide too.

sammy289 profile image
sammy289 in reply to Lupiknits

hello thank you for your message it is awful having suicidal thoughts, I have the menopause too so my moods are all over the place.

I hope you are having a good day? Take care big hugs

Lupiknits profile image
Lupiknits in reply to sammy289

Big hugs right back x

Hi Sam. So sorry to hear you are going through this. I hit rock bottom about 6 months ago coping with every thing. I found CBT really helpful in terms of how to manage intrusive thoughts. I also started on sertraline, vitamin d and magnesium spray (as deficiencies in these can cause depression ). Gentle exercise really helped...even when all I wanted to do was stay in bed. Thankfully i've got dogs so they had to be walked

Do your have any pets? Doing art or colouring really helped. I also had a head mri scan for cns lupus. It will all improve. I didn't believe it at the time but it does. Having people around me helped (I usually prefer to be on my own). Thinking of you and sending you positive wishes.xx

I am so sorry and so happy you are reaching out to others. Please seek treatment for depression just as you do for your lupus or would any other disease like cancer or heart disease. Depression is just as serious and too often also terminal. :(

As to CBT in six months I went from being unable to function to feeling stronger, happier, calmer and alive again. It has saved my life in many ways. I will never stop this treatment. Due to warfarin, my doctors wanted me to avoid ssri's but I also believe if they are safe for you they too can be life changing and sometimes they might be necessary in the initial stages of treatment for serious and acute depression.

Please know I am here if you have specific questions you could pm me.


Hi Sam - so many of us have dark thoughts and it is good you have reached out. It is a really awful chronic illness which is only really understood by us! I am on antidepressants and I have learned to distract myself. My friends now help because I took over a support group in my area and that is how they became friends. We call or text or email. It usually only takes very few minutes to help lift our spirits. Our meetings are very helpful to all of us. We have coffee, eat, discuss symptoms and swap remedies and always, always LAUGH. Look on the Lupus website or magazine to see if there is one in your area or call these good people at LupusUK who will help. You will never feel isolated again. Do it today ! 🥳

I had great results w behavioral therapist. I was lucky to get a great therapist specialized in dealing w chronic illness. Apart from that im taking Cymbalta that also has antidepressant properties. I believe a combo of behavioral therapy and meds is the best to deal w depression.

Chanpreet_Walia profile image

Hi Sam,

It is possible that some treatments for lupus such as prednisolone (steroids) could trigger or exacerbate depression and/or anxiety.

Mood swings can be a symptom of living with chronic pain, depression or anxiety. We published a blog article on ‘coping with depression and anxiety’ which you may like to read:

We published a lupus and depression leaflet which has some helpline contact numbers which you may find useful -

Best wishes!

It’s horrible I’m sorry you feal low cbt is brilliant however it’s hard but know this you can dig yourself out of the hole I was lucky my wife my rock helped me more than she will ever know ,look at the positive not the negative and have something to look forward to book a spar day I’m a bloke and I love spar days just don’t tell them on the building site 😂

Had CBT WHEN MY LUNG SCARRING became really bad.

My head was everywhere- didn’t know what to think.

The GP gave me a leaflet.i self referred.

I was impressed by how fast they moved.

I was assessed by phone on new. Years. Eve.

Was told that I scored ?

I was offered online or appointment CBT.

I HAD SO MANY appointments at that time that I chose online CBT.

Contact was all online.,appointments agreed well in advance. Enabling me to sort my life out.

I don’t know what I expected,but I was surprised at how it worked.

Seemed really strange at first,but soon got in to it.

It didn’t help my physical health,but did help me to sort my head out and to arrange/ rearrange the way I think.

I di think that it was possible to change my thoughts attitudes,but somehow,it helped!

When I did the CBT I wasn’t suffering depression/ low mood/ anxiety.

I was aware of the potential to develop any or all of these,having spent my working life in acute mental. Health.

I would say give it a try. Be very kind to yourself,even if it’s just a fancy coffee or a good hand cream / new lipstick.

A big thank you to all who sent me a message it is so nice to talk with other people who are in the same boat as me, it is very encouraging and lovely. Hope you are all well today. Sam xx

Hi all I am still very low and had enough I don't feel any brighter, I just don't want to do anything not even get dressed. dont want to see anyone. I have a constant headache.

Spoke to Doctor today and she said she is going to message my consultant as my inflammation markers are high. I am not getting any joint pain. so I am now worrying about that.

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